Day After Surgery and Easter

I thought I was strong, but I don't know that I am. Yesterday, was one of the hardest days of my life. John thinks it was second to the day we thought her transplant failed. It was probably one of the hardest for Brianna, except for the fact that she has been sedated. Thankfully, Brianna is doing well, but I sobbed and sobbed.

Brianna went into surgery yesterday morning. We hugged and kissed her before she went in and told her we loved her. I took her glasses, and she was wheeled into the surgery suite.

A scope was put in her chest along with a chest tube to drain the fluid around her lung. The good news was that the effusion was not infected and was more like blood-tinged clear fluid. Brianna is the strongest woman I know. She was carrying around two-and-a-half liters of fluid inside the right part of her chest. All of the health care professionals marveled at how well she was breathing on her own with such a huge effusion. Dr. Whyte performed the surgery and Dr. Weinberg, our BMT doctor, was in the O.R. with Brianna the entire time.

After draining the fluid, the thoracic surgeon said the right lung did not inflate on its own. He also noticed that the outside of the lung was thickened with scar tissue, which would inhibit the lung from inflating. So a decision was made to go in to her chest with a 6-inch incision along the bottom of her shoulder blade to peel some of the scar tissue off.

Bleeding issues and lack of platelets didn't really affect Brianna. She was given a unit of platelets in surgery and her white count was 5.5. The doctors said she did very well during the whole procedure. After peeling the lung, which was like peeling an apple rather than an orange, the tissue on the bottom, middle and lower portion of the top lobe all looked diseased. This was not what we wanted to hear. But instead of taking any of her lung out, Dr. Whyte left it all intact, and closed her up, leaving two chest tubes- one on the front of her chest and one at the back.

These tubes are about an inch wide, and anytime you leave something like that in the body, especially the very sensitive lining of the lung, it is extremely painful. Fortunately, she was very sedated the entire time.

The doctors decided not to remove any part of her lung, because it all looked the same, and while it is an uphill battle, he has seen lung tissue like this heal. Any time someone has a bad pneumonia, the tissue doesn't look healthy, but can sometimes heal and thus he left it all in. As he said, once you take the lung out, you can't go back. Plus, because she is immune suppressed, if he took the entire right lung out, it would leave a huge empty area in the chest, which would be very susceptible to infection. The doctors said her long-term life prognosis would not be good.

The other consideration was that a blood test that was done about a month ago showed that the amount of aspergillus in her system was 2.0. For a normal person is would be below 0.5. When the same test was taken on Monday, the level dropped to 1.08. So the antifungals are working, more encouraging news.

As we were told what the doctors found during surgery, John and I sat just listening. Then, after 20 minutes, I just started crying uncontrobably. I guess it was just time for me to break down. My husband is so strong and although he had to struggle to control his own emotions, he was able to comfort me with all the positive news we had gotten from Dr. Whyte who knows lungs and has seen lots of them.

So it was decided to keep Brianna on a ventilator with a breathing tube down her throat to see if the positive pressure would help inflate her right lungs. An x-ray taken soon after surgery, showed much more aeration in the top lobe and maybe a little in the bottom lobe. This was very promising, also.

I thought that I was ready to see her in the pediatric cardiovascular intensive care unit, but I wasn't. We didn't get to see her until about 2 pm. She is in a double door isolation room, much like the transplant rooms we were in for two months. Anyone going in or out, must wash their hands and wear a mask, because of the risk of infection.

We went into her room along with her nurse and talked quietly to her while she was sedated. But at one point, she started to wake up and held onto my hand and onto John's hand, squeezing them extremely tight. We had to hold her hands away from the breathing tube, because she was trying to take it out and gasp for her own breath. You can't talk when you're on a ventilator, but it seemed that she was in pain. So I talked with the CVICU physician about increasing her pain medicatin and making sure she remained sedated. After giving her a couple of extra morphine pushes into her IV, she settled down and was finally made comfortable.

But a parent is not supposed to see their child like this. She has tubes everywhere, her legs are in inflatable compresses to avoid clots after surgery and she has two IVs in her left arm - one to check her blood pressure and one for extra access to her venous system. This despite the fact that she has a central line with two leumens - both of which have many lines hooked up to them. The breathing tube is taped to her face in order to keep it in place and she has a nasal-gastro line taped to her nose, to keep it from shifting from her nose to her stomach. Her eyes are closed but her lashes are smeared with a jell-like substance which become tears to keep her eyes moistened.

When she was moved to the CVICU, we were kicked out of our room and had to move everything to the car. You are not allowed to sleep in the room with her, but can stay as long as you are awake. We had to get a hotel room for the night and have reserved it for tonight as well. We're hoping we can get into the Ronald McDonald house in the next day or so, until she is out of the CVICU and can return to a transplant room on 2 North.

The doctors and nurses said we should go get some rest while she was sedated. So we left and are only just a mile away from the hospital. But sleep was the last thing we could do. From our many bags of belongings, I took a pink shaggy, heart-shaped pillow Brianna used in the hospital. I clung to it all night, prayed for her health and strength, and tried to sleep. We were both able to get some rest for several hours, but we were both extremely restless. Sleep is the last thing you can do when you are not with your child who is sick and your child is in the hospital a mile down the road. And the terrible thing about it is that it is what your body needs desperately in to to stay strong.

An x-ray today reveals that her upper lung does look like it's getting more air, but the two bottom lobes look unchanged. We haven't met with the doctors yet, but there is talk of removing the breathing tube. She is doing it all on her own. Our daughter is so strong-willed - thank God - and so strong, I cannot imagine. She is also given a drug to help her forget all this - a wonderful new medication for experiences like these.

She had a good night the nurse tells us and had a slight fever. But that has come down slightly this morning. After surgery her white count was 4.5 and her hemoglobin 9.2 (her red blood cells). This morning, her white count is back up to 5.5, her ANC 4,000 and her hemoglobin 10.2 - even though she didn't get an infusion of packed red blood cells. We're hopeful this means her red blood cells are starting to be produced by her marrow.

As my husband says, "The wolves didn't get us, but we're still not out of the woods." On this Easter day, we pray that infection is kept at bay, her lung continues to improve, the chest tubes are no longer needed and no more fluid accumulates and that she starts healing thoroughly.